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Polymyalgia Rheumatica and GCA

Also known as GCA - Giant Cell Arteritis, Temporal Arteritis

All discussions in this group

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  • Pinned

    Reducing pred: dead slow and nearly stop method

    Copied from Eileen's post in another discussion. A group of us worked out reduction schemes individually that have allowed us to reduce far further than ever before but they are all basically the same - and they were based on a scheme a Swedish gentleman worked out when he simply couldn't get...

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    Research: GCA & PMR

    The Research & Development section of Queen Elizabeth Hospital Gateshead NHS Foundation Trust will now undertake qualitative research following the result of the basic survey which we did last year on ‘Your Ears’. We donated £1000 start-up costs. All future costs will now be paid by the NHS....

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    PMR-GCA website addresses and resources

    If anyone has any further suggestions for inclusion do not reply to this but please contact me separately. PMR-GCA NE can be found at www.pmr-gca-northeast.org.uk PMRGCA-NW SUPPORT GROUP http://www.pmrgcasupport.co.uk/ The forums within the NE site are here - http://pmrandgca.myfunforum.org/index.php...

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  • Residual PMR pain whatever the dose

    In 2105 EileenH wrote, "But whatever dose, there is often some residual pain, you aren't pain-free".  I am 5 weeks on prednisolone and back to full fitness (with sport aplenty) but I do have mild persistent pain in my outer shoulders (none in my hips).  This mild pain...

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  • Tiredness.

    could someone help please.  I am down now to 12.5 mg of Prednisone.  Although my pain is not too bad I am so abjectly tired all the time.  Does anyone else suffer from this tiredness.  It is a living death and I have a very sick husband to take care of at the same time.

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  • Curing PMR naturally

    Hi, Has anyone tried successfully to cure PMR without medicine, just by vastly improving the diet? I'm trying it and I would like to know of any success stories. Thanks

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  • Adrenal suppression and prednisolone timing

    I'm new to PMR and have taken 20 mg prednisolone for a week, with pain and stiffness from dawn to mid-afternoon. A few days at 25 mg has not helped. Consequently I am considering a split dose or moving to a single 2am dose.  How worried should I be about long-term adrenal suppression? ...

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  • Pmr and body swelling or blobbiness

    I got pmr in August 2016, started on pred that September.  Prior to the onset of my incredible pain, I had some soreness and stiffness in my groins upon movement, but I also had a ton of swelling or bloating in my abdominal area all the way from my lower pelvic area to my breasts), upper thighs...

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  • Reg coughing up blood

    Hi all yesterday I went for my blood talking then yesterday evening I got a txt msg off the doc surgery sAying iv got a severe vitamin D deficiency got a prescription for the vitamin D today . Just wondering if that could be partly as to why I'm coughing up blood , well actually I haven't done...

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  • Weight lifting with PMR to minimize muscle loss

    I have worked out for years, and lost 15 pounds of muscle in 15 days. Does anyone have any suggestions about working with weights while you have PMR? I seems to do better regarding pain when I do lower weights and high reps. I am new to PMR and would like to improve the learning curve regarding working...

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  • Anyone with ESR of 1!

    Was surprised to see my ESR this month had dropped to 1 from 4.  Anyone else have this reading? Not that I am complaining - just interested.

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  • Lyrica

    I have had PMR since August 2006 and started on 15 mgs of Prednisone. I have tried to reduce the dosage twice, 1 mg reduction monthly and each time I have got down to 9/10 mgs the symptoms have come back and I gone back up to 15 mgs. The last occasion, the increase did not get my symptons under control....

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  • Diagnosis or not?

    After 2yrs. of uncertainty, my Rheum. sent me for a second opinion to a Professor of Vasculitis at a different Hospital. She cut my Pred. to 15mgs. from 20mgs. then sent me for a second PET/CT scan, a bone scan, and a CT angiogram on my aorta. The PET/CT scan was negative (allowing that the Pred. could...

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  • Has anyone had dental/mouth pain with PMR/GCA?

    I was diagnosed with PMR/GCA in July. The pain I have is not the pain I had when dx with GCA. Last week I had 2 root canals one on each side of my lower jaw.  My endo stated during the procedure that I had a lot of inflammation. Since then I've experienced jaw/dental/mouth pain like I have in...

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  • Stomach!!

    I have a history of stomach ulcers.  I intend to ask about enteric prednisone or injections, but my stomach is sooo sore and swollen I get short of breath.. eating ice cream helps (except I’m sure it’s packing on some extra weight)  I hope i can hold up til after the holiday, as rheum is out...

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  • PMR and Fibromyalgia

    I have been diagnosed with PMR and Fibromyalgia. It is hard to differentiate what pain and stiffness is which. Anyone else diagnosed with both? I am always extremely fatigued, stiff, painful and unable to do very much I used to. I try to walk, ride my fat tire bike, and do some chores. I have a tremendous...

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  • Prednisolone and Irritable bowel syndrome

    Hi Everyone, I have had PMR for a year now. Started at 30mg and tapered to 7mg. Unfortunately had a bit of a flare so went back to 10mg when I was last good. Now on 9mg and will cut down again soon. My question is this,having suffered with IBS for many years and have coped with the tummy upsets associated...

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  • Anyone tried LDN for PMR?

    I've recently stumbled across some information on something called LDN (low dose naltrexone) which seems to be positive for the treatment of a whole host of autoimmune conditions, PMR possibly being one of them.  Naltrexone apparently is a medication used in opioid and alcohol addiction treatment...

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  • Not getting anywhere!

    Hi everyone, Well it’s been 2 1/2 years since first visiting my GP in screaming agony , he believed I had PMR and started me on predisolone as normal (40mg a day) which certainly did the trick. Eventually got to see a Consultant Rheumatologist who said I had reactive arthritis and it would go after about...

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  • Tapering Prednisone : Increase in OA pain ?

    Hi all, I have bee away for a few weeks, and the wedding went well thank you, my daughter looked lovely. Myself I lasted the week away but with some pain.  My question is has anyone else with OA felt worse pain when tapering down off Prednisone.? I have pain that I never had before or increased...

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  • Understanding Rheumatologist deptartment

    just wanted to share with you all, I received a letter to change my next Rheumatologist appt, I rang the department to make sure I would be seeing the same consultant, whilst I was on the phone the nurse gave me a telephone number of the specialist Rheumatologist nurses, if I had a flare instead of going...

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  • skin problems on prednisone? Am I infection prone?

    Diagnosed with GCA and PMR in August, 2017.   I have had two or three episodes of skin rashes, mainly near my rectum.  The skin surrounding the rectum gets very pink and sometimes painful.  I have never had rashes in this area before starting on Prednisone.  I've been using ...

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  • Coping with Giant Cell Arteritis

    I was diagnosed GCA in October last year. CRP level was 76. Immediately put on high dosage prednisone and within weeks, CRP down to 4, currently on 7. Every test possible was conducted, cardiac, vascular, optic. Biopsy of minor temporal artery confirmed diagnosis which was first mis-diagnosed as TIA...

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  • Had Cortisone Injections done

    Hi all, well my last post was about 2 months ago and I asked advice on the Cortisone Injections in my facet joints... I went ahead and had them done on the 5th October, he did 2 in each side. So far they are working at I would say 60% less pain, at least now I can stand and walk for more than 15 mins...

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  • Symptoms

    I am new to this.  I was on 60 mg prednisone for two weeks, went down to 50 mg  Two days ago.   Today, good until 830 pm when I got out of work and was walking about .5 miles to car, got the pain behind my eyeball and base of skull  Also same side still healing biopsy site painful ...

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  • Is it a flareup or prednisone withdraw?

    Hi all 2 years ago I was sort of diagnosed with PMR or LORA My esr and cpk were extremely high yet my ANA,s were normal. The symptons were extreme pain in my arms legs and feet with stiffness. Started on 60mg prednisone which did give relief then slowly overtime started to reduce. During this time was...

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  • Visit with Rheumatology

    Just saw my rheum.  She is diagnosing PMR and GCA due to positive response to steroids 60 mg last two weeks.   We are going to go down by 10 mg every 2 weeks til at 20 mg then slower from there if symptoms I go back to the previous dose without symptoms... added bactrim 3xs a week to prevent...

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  • Coughing up blood

    Hi everybody just wondering if anyone on pred is coughing up bit of black blood I started to cough up black blood about a couple of months ago thought nothing of it as it was just once or twice but this week it been every morning and sometimes in the night I've had to get up with acid reflux I take...

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  • Sixteen years and my PMR has now gone pearshape......

    Having had PMR for about 16 years , the last 5 years mostly on 5 mg of a morning, except for some minor flares that have been nipped in the bud by doubling the daily dose for a maximum of 4 days, I now find I am starting the long haul of reducing from 20 mg daily. I am saying how could this have happened...

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  • Stomach Protection

    I have not been on the forum for a while.  I was diagnosed with GCA in March 2016 and managed to get down to 3mg Prednisolone by September 2017 - a nightmare of side effects throughout from Prednisolone, Omeprazole and Ranitidine.  Unfortunately I've had a flare and was put back to 20mg...

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  • How I manage the pills I make a calendar

     I make a calendar with the doses based on that nearly stop slow method.. Each day has the dose that’s necessary for that day. Each week has a color code.  The weekly pill boxes seven days each have corresponding colors to the weeks. I always keep the different doses of prednisone the different...

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  • The blues....

    Hello Lovely Community After an idiotic mistake in dosaging And a roller coaster of ups and downs, I am back on 10 mg of pred. after a burst  to 30 25 20  a month ago, due to return of symptoms , including headaches. I was able to completely enjoy my daughters wedding on that dose which was...

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  • PMR or something else

    Hi After 3 years on pred, reducing slowly I got down to 1mg but was still experiencing pain, I wasn't sure if this was PMR related or not. .Around  6 months ago I stopped taking pred altogether, the pain hasn't got any worse and it isn't the same pain as I had when I first started...

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